Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Part 10 & 11

So we wake up on the day we are suppose to be discharged and Josh and I head to the hospital. Brenda had spent the night with Hailey. When we get to the hospital Brenda goes home and says to call when we are on the way home. The social worker comes in to talk to us and asks if we are ready to get outta here. I say yes and no. Yes I want to go home but no I am not ready for taking care of Hailey by myself. The social worker says he called the walker company and they will drop off Hailey's walker at the house. He asked if we had the crib set up for Hailey and if we had all the numbers to the places I had to call. He told me to set up rehab appointments as soon as I can. While he is talking to me the neurologist comes in. He said he wanted us to stay another day to have Hailey take another MRI.?! I totally thought we were going home? He then says he's going to see if we can get one tomorrow if not today. He leaves and comes back. He says," You know, I think it's better if we hold off on the MRI. I want to see her in my office in 2 weeks instead. You can go home today." HOLY MOLY. The social worker asked me how I liked that roller coaster ride I was just on. I said, "exactly." So we are leaving today? I tell Josh as soon as they sign the papers let's get out of here before they change their mind again.!

I am getting Hailey dressed and ready and then the Doctors and nurse come in to tell us that we are nearly ready to go. We are getting the prescriptions written up, the dosage schedule squared away and my head is spinning again. The steroid she will be on for the next 70 days have a dosage schedule I have to follow that changes every 10 days. Just so we are clear I am the one with the schedule and listening to the nurses. The medication will be on my shoulders. I will give her the first dose when we get home. Along with the steroid I will be administrating the other medications too. All at different times at different measurements. They ask if we have any last questions and if we are ready to go. I take a second to think...am I? How can I be leaving the hospital and Hailey is still "sick"? I am taking her home semi worse then when I brought her even though she is improving.

The nurse brings in a wheelchair and I sit in it with Hailey on my lap. We are finally getting out of here! We are wheeled out to the parking garage and Hailey hasn't been outside in over a week. Her eyes are still really sensitive and I put my sunglasses on her that she doesn't want to keep on. We put her in her car seat, strap her in and she has the biggest smile on her face. She is sitting up, by herself and not shaking. Josh calls his mom to let her know we are on our way. She said she set up the couch with a pillow and blanket so she can be downstairs with all of us. It was such a long ride home. I even sat in back with her like I did the first time I brought her home from the hospital after she was born. When we pull into the drive way you can tell she was trying to say, "Hailey's home."

Our two dogs were so happy to see Hailey in Josh's arms when we came through the door. Daisy who is usually the one who seems to be on crack was surprisingly better behaved then normal. The two pups just kept sniffing and sniffing. Josh put Hailey on the couch with her pillow and Dora blanket (thanks Sarah!) and she sat by Josh's dad. She looks exhausted. It's time for me to get to work. I send Josh to fill all the prescriptions and I call the walker people to drop off the walker. Josh's mom is going to work on getting some food together and then when Josh gets back he has to put Hailey's crib back together. Then after dinner Josh's dad is going to go back to Washington and Brenda will be here for the rest of the week.

Josh comes back with the medications she will need and I have my planner set up and ready to help me give her what I need and when.

With it all written out it is less daunting to me. I just cross off as I go. Her Walker arrives and we set up Hailey's high chair and set her up to come eat with the family. She is excited to do so but quickly realizes she can't use her fork. I tell her it's okay to use her hands until we can re-learn how to use a fork and spoon, but I leave them on her tray in case she wants to give them a try. She is a lot better with eating. She is slowing picking up the food and placing it in her mouth. She didn't bite her tongue this time and she didn't hit herself in the face, which meant the jerking has stopped. Now, carrying this kid never seemed so hard before. She seemed SO much heavier. I decide it would probably do her good to have a nice bath before bed and Brenda helps with that. Since Hailey can sit up by herself somewhat Brenda held her under her arms and I did all the scrubbing. A good tip for this situation was putting a towel in the tub under Hailey to give her some grip and reduce sliding. That helped a lot. Then lifting her out of the tub was another story. How was I going to do this on my own? I only have 2 arms. I pictured myself having to be in the tub with her for baths. After bath time, I put Hailey in some comfy pajamas and we came downstairs to say goodbye to her grandpa. It was a very long day. In the end we are all home together again and it's time for a good nights sleep!

Part 11

The next couple of weeks were both stressful and crazy and also amazing. Hailey had been home for 2 days and in those two days we have had several sessions of tummy time. Just like when she was a baby she was not a fan. After tummy time Hailey would lay on her back and I would do some sensory therapy. The occupational therapist gave me a special brush to use on Hailey's arms and legs. Her nerves were on hyper drive at the hospital this brushing was suppose to help with that. Hailey could roll over on her own and go into a sitting position on her own! What a change in just 2 days at home!

My dad finally came to visit. He had been holding back because he couldn't stop crying thinking about what was happening. I told him we are doing well and he is welcome to come whenever. He said he would be down in a couple hours. Hailey had just started pulling herself up off the floor using the couch. You can tell she is getting her strength back. These medications are like magic, or maybe I just wanted to think so. My dad had came over and was giving Hailey lots of hugs when she asked what sounded like "get down?" He was unsure and I said to let her stand up on the floor just hold onto her. She stood up and looked at me who was sitting across and she took 2 steps! Um..okay? I was so confused and happy at the same time. I mean the steps were wobbly, but she did it and she was excited too! She did it again and again. Two steps to me and two steps to my dad. She did get really tired after that. I ended up feeding her lunch and she took a pretty good nap. I had called her pediatrician for a hospital follow up that we would be going to tomorrow to double check what I needed to bring and was preparing for that during nap time. I myself should have taken a nap. I really felt like I needed one!

That night when Josh got home I think we were all excited to show him what Hailey could do. I had her on the couch and when Josh got home I told him to stand across from us. Hailey got down off my lap and set her sights on her dad. She took 3 big wobbly steps before almost falling into Josh's arms. We all clapped and cheered and she wanted to do it over and over and over again. After dinner we keep practicing. Josh tells me to let her walk without me hovering over her, but I can't. I don't want her to fall. I get my planner out and start writing down my appointments for this month and next.

The next day we go to the pediatrician office. This is my original Pediatrician, not the idiot who sent me home when I brought Hailey in 2 weeks ago and said Hailey was probably dehydrated and tired. He was as confused as us to what had caused this. He said that in his experience with kids with ADEM if we can't find a cause he would guess it would be an auto immune thing, but again he doesn't know for sure and if that is what it is that is NOT good. At the office I need to get referrals for all the other doctors I need to see. Opthamologist, Neurologist, cardiologist etc...It was so odd. Before we got there Hailey was in a great mood. When we get there and the doctor comes in her whole mood darkened. She is having some association issues with doctors. When we arrive back at home she's good again. She takes hold of her walker and isn't quite sure how to use it. She doesn't know if you push it as you walk or what. I try and tell her push a little and take a few steps, then do it over and over. She insists that you push and walk at the same time. We work with it for a while and she's not thrilled with it but she's using it. Later after dinner I had made ice cream sundaes for dessert. I am in the kitchen doing dishes when I hear Josh say, "give this to mom." When I turn around here comes Hailey with Josh's bowl and from the living room to the kitchen she walks to me and hands me the bowl. WHAT?!?!? Holy Crap! She did it! Still unsteady but she can do it. She doesn't want the walker. It's been 4 days since we have been home from the hospital and what a complete turn around! This is great! We get ready for bed and I put Hailey to sleep and I think that was actually the first night I got a full night's sleep without nightmares or waking up to check on her in the middle of the night. The next morning she is calling for me and when I go into her room she is STANDING IN HER CRIB! I put that in caps because it was such a huge step in the right direction! I said good morning and gave her a big hug and kiss!

Now I know what you're thinking. Things are going great, things are getting better. While this was written over a year ago I can jump to the present and tell you things aren't great and things didn't get better. It has drained me to relive this experience and there is so much more that happened and so much more to tell. Please bare with me as I put this all back together for you. There are 3 more trips to the hospital in our future and then the big, horrible news we get in regards to our little girl. I had written all this a year ago like I said and then I stopped documenting for awhile. I will work on this as time permits. Please stay tuned for the rest of our story.